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So, four CYP interviews, 3 of which included a parent. Then focus groups with seven professionals. and then clinicians complain that surveys of hundreds or thousands of pwME or LC are not important!

David Systrom (Harvard) has shown preload failure, ie reduced filling of the heart before it contracts to send blood round the body, including thr brain.

This would definitely have helped Graham, who had moderate ME, for at least some of the time he was in hospital. He had problems hearing/understanding. His wife and son could not visit, partially due to risk of catching Covid and part due to their health. He couldn't eat onions/garlic and...

It's maybe more likely to relate to the article mentioned here: https://www.thetimes.com/uk/healthcare/article/me-cfs-sufferers-ignored-nhs-care-lottery-bxzlxmrm2 Also on UK info thread . Also members of the LC APPG may not have heard that much about DECODE yet

DELAYS IN RECEIVING PIP FORM BY POST I have finally got round to applying for the mobility element of PIP because of the limitations relating to my spinal deformity. I called DWP on 11 Feb and was told it could take 2-3 weeks for a form to arrive. As mine is straight forward and only requires...

Her cognitive impairment was huge. Prior to developing ME, after viral labyrihthitis, she had been studying Maths and other A levels. She had 3 separate periods of improving after certain antibiotics. The first was twice weekly i/m injections of penicilin for c 8 weeks. Towards the end of this...

This is the message that LCA (Long Covid Advocacy) are promoting: 'Over 2 million people are suffering from Long Covid, facing debilitating symptoms that rob them of their health and quality of life. The economic impact is staggering. We must urgently fund research to uncover its cause, find...

My daughter, who has ME has found that Daridorexant, the orexin (wakefulness) receptor inhibitor helpful for her sleep. Her delayed sleep onset has come down to about an hour, from 2-3+ hrs. Also, when she wakes, which happened frequently, she goes back to sleep much more quickly and seems much...

Summary of the process: https://docs.google.com/document/d/1r4xXiJvxXn2UUy2YgrIleUKOOsOAOhVGSsQVwbEYjE0/edit?tab=t.0

It has absolutely nothing alongside his name under 'field of business', which seems appropriate to me.

Well done. Is she a member of the APPG?

BACME have recently recruited another carer to this group. I do not know any background to this guy, other than he is the same carer group as Ceri Rutter, their main patient rep. If anyone was interested, they could contact to ask them if they want more

Apologies if this has been mentioned and/or is in the wrong place. This Long Covid article includes numerous videos and narratives about PESE/PEM, some of which could be helpful in explaining the nature of PEM to family/friends/clinicians/DWP...

Figure 3 in their paper shows that concentration of the Herpes virus DNA was highest for HHV-7, than HSV-1, EBV and HHV6B. "To investigate viral persistence, the proportion of samples from each participant that were HHV-positive over the time course was determined (Figure 3B). HHV-7 was...

Excellent video, thanks for sharing. He mentions palpitations when walking a few feet in his garden in the garden. Some POTS meds might well help. Beyong tragic that all the LC and ME clinics have just been merged into "fatigue" ones.

Another great video Adam and thanks to John for your work as well

Does include Nathalie Hilliard, one of the 4 Physios for ME and a person from LC Scotland in the authors. Uses HR monitoring: "During enrolment in the study, participants were allocated time and heart rate (HR) limits of attempting to spend no more than 30 min per day above 60% of their...

@MBailey has anyone from ForwardME been invited?

Sometimes I find it useful to use other terms eg when explaining the issues to HCPs, DWP, some friends etc. This is from MEpedia: https://www.me-pedia.org/wiki/Cognitive_dysfunction#:~:text=Forms%20of%20cognitive%20dysfunction%20commonly,information%2C%20difficulty%20sequencing%20words%20and...

Not a magic recovery story: "Over time, Clarke slowly found her way back to writing. She learned to manage her symptoms, and discovered she could stay on track by working in 25-minute bursts. Her brain fog receded." Re her second novel in 2020: "The philosophical puzzle at the story’s center...